This Isn't Goodbye

journal entry and medical update

Picture in app generated

Today marks a week, since I have opened my laptop. I have stared at it a few times wondering when I would write and share what I am about to share today.

I received notification that my new scan results were in, late Monday, May 18th. If you are anything like me, you would have done what I did and go read the reports and view the scans. Then I looked up what the medical language meant.

I gave it a few days to hear from the Dr. yet by Friday arriving without any phone call, I decided to call the office to inquire. The receptionist was kind and courteous, yet when she said the next available appointment would be January, I said absolutely not. I was not waiting six months, unacceptable! After being placed on a brief hold, the receptionist returned with the date of May 26 via tele-visit.

Well, last Tuesday at 2pm I had that visit. We discussed the findings and I asked some hard questions about the options she presented me with about different procedures and so forth.

I will say I was very appreciative of her compassion and truthfulness when I presented my concerns. The call lasted about 35 minutes.

Billy was napping by this time, so my first phone call was to my bestie, back north. I knew my daughters were busy working and then would have family responsibilities, plus the following day was my eldest birthday, and I wouldn't be sharing with her until at least the weekend.

I texted a dear friend and he and his love, another dear soul, were not long texting back words of support. If you guys are reading this, that moment meant so much to me. You held space for me to bounce my emotions and my initial thoughts of what to do next. 💞

The following day, I happened upon an article in my feed that in my comment the words came out. I had yet to tell family so placing there randomly in a comment felt safe and was related to the topic at hand.

A few people reached out to me, one privately one within the comment section. I want to say, it not only warmed my heart but brought me comfort. Thank you, for you know who you are. 💞

Now that family that need know, knows, I will share with you all.

My condition is progressing. MS is not suspected, though demyelination has occurred throughout my spine and I have lesions in both my brain and spinal canal. I have severe S shaped curvature and twisting caused by both muscle weakness from the dystonia and probable Multiple System Atrophy.

The doctor conquers with me that my cognitive abilities this late in the game rules against Lewy Bodies Dementia. That finding, I am thankful for. I get to keep my mind and will attribute stress and age to some of my memory and word finding difficulties.

When I conveyed to the doctor, the procedures, my gastrologist is recommending and my concerns of my quality of life, I asked direct straight forward questions. She spoke back clearly what she heard me asking and answered without sugar-coating or diminishing my concerns for a dignified ending on my terms.

Nothing will change the trajectory of this illness. No tests, no procedures, nothing changes the outcome. The only thing left to decide was something I have given years of thought. What I am willing to further endure to keep the shell of my being alive? I choose not to have any more invasive or extraordinary diagnostics or procedures from this moment forward.

She sent out my referral and authorization to the insurance so that I may begin Palliative Care.

The focus now is to get my brother back home and into suitable affordable housing and care. Once he is back north then I can focus on selling this place and moving north myself. The plan discussed with my girls is for me to live with my eldest daughter and her family.

By beginning palliative care here, it will aide in my transition home, that is at an unspecified date as of right now. This process is going to take time and I'm hoping his transition happens before summers end.

I have learned that I have a way that I deal with things. It is like the stages one goes through with grief. It doesn't take me as long to go through the stages as it did in my youth. Time, maturity and life experiences have contributed to that. Another blessing I am thankful for in this moment.

I will continue sharing my creations of poems, art and thoughts as long as I am able. I might even do some video blogging when typing becomes too cumbersome.

Next week I will fly home to see my girls and to seek housing for Bill while I am there. My birthday is the 15th and I will enjoy being home with family and a trip to the local Casino as a treat. Granny will stay with Bill the week I'll be gone.

Her company and presences in the house will give him and me comfort he is not alone. The blessings are many that I think of during this time. This platform and the people here counted amongst them.

It is not goodbye…. It is until I see you again

✨Be the Light